Welcome to the San Diego Chapter!

Thank you for visiting the San Diego Chapter of the FSHD Society which officially launched in May 2019. We are here to build a local community of patients, family and friends, and help them connect and advocate for themselves and each other. Our hope for the future is to find a cure – Until then, we hope to bring a greater awareness to the community, and to help improve the quality of life of all those affected.

Thank you for supporting the Walk & Roll in 2022!

A huge THANK YOU to everyone who walked, rolled, donated, and showed up on Saturday, September 10th in Harbor Island Park in San Diego, CA! We are thrilled to announce that we raised over $40,000!!! There is still time to contribute, and you can do so here: https://team.fshdsociety.org/caliwalkroll/event/sandiego

Want to know more about the Walk & Roll? Learn More

 

Volunteer Spotlight: Amy Bekier

Hear from your local Chapter Director (and National Board Member!), Amy Bekier, about her journey with FSHD, how she got involved with the FSHD Society, and what she gets out of her work.

Volunteer Spotlight: Dana Simone-Kurtz

Next, meet your local Walk & Roll Coordinator, Dana Simone-Kurtz! She describes her relationship to the disease, her motivation, and advice for the newly diagnosed.

Upcoming Events

Today

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Women on Wellness: On Mattering

Zoom Virtual Meeting

First Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we'll be talking about "mattering," feeling valued as a... Read More »

San Diego Chapter Meeting and Holiday Party

Avidity Biosciences 10975 N Torrey Pines Rd., La Jolla, CA

Please join us for a Chapter Meeting and Holiday Party!                 Light refreshments and beverages will be provided. Researchers from the Avidity Team... Read More »

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Amy Bekier

AMY BEKIER

Chapter Director

Amy Bekier obtained an M.S. in Education from Queens College, NY and had a career as an insurance agent and Chartered Life Underwriter. When FSH muscular dystrophy began affecting her and her family her motto became, “I can no longer sit and cope but must get active and hope”. After relocating to San Diego she joined the FSHD Society as a national Board member and Chapter Leader.

Amy is a passionate award winning artist who enjoys painting with soft pastels and oil.  When she could no longer raise her right arm to paint, she taught herself to paint left handed. Until recently Amy played modified recreational golf and continues to be a member of the Bernardo Heights Country Club.

Stay Informed on Chapter Activities!

Join the world’s largest network of patients, families, clinicians, researchers, and friends advocating for FSH muscular dystrophy. Let us know you want to be a part of your local chapter and you'll never miss a meeting or event notice.

When you sign up you'll receive the latest word on clinical trials, information on how to live strong, and about local events that will connect to our remarkable community. You will also have the option to join our patient contact registry.

If you want to know more about this and why it is so important, learn more HERE

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